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suemar

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Hello All

I have been preliminarily diagnosed with ALS thru St. Mike;s Hospital and was extremely upset with the way the neuro handled it. He told me that u just die with ALS. I then went to Sunnybrook last Tuesday and saw Dr. Zinman who would not give me a diagnosis until he does another EMG and also wants family history and autopsy reports for my dad who had MS and uncle who had ALS.

Neuro from St. Mike's called me this week and after discussion he apologized to me and advised me that my blood test for treatable multi focal motor neuropathy came back slightly positive and wants me to come back for more tests. I have an apt. nxt Thursday. Not getting my hopes up but any news is good I guess. I have almost resigned myself to ALs and am getting my affairs in order. I can't believe how fast this hits u after initial onset. symptoms started in Mar and now I have trouble walking any distance and arms and hands r very weak. Has anyone else had this happen so rapidly?
 

Granny

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Hi Suemar,
I have not had your experience with the progression of ALS, but maybe someone else will answer that. I just wanted to say how happy I am for you that you got a bit of maybe good news, and that the doctor was person enough to apologize. I wish only the best for you, and thank you for sharing.
Hugs and prayers, Leah
 

Al

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Hi Suemar. I see Dr. Zinman at Sunnybrook and he is very thorough and I would be disappointed in him if he just followed someone elses tests without doing his own. I know they are uncomfortable and even painful but to really get a proper diagnosis they need to be done more than once. I've had mine done in Brampton, Toronto General with a lady Doctor who shall remain nameless and then at Sunnybrooke twice and by Dr. Medroni at St. Mikes. Here's hoping you have Multifocal Motor Neuropathy. They at one point thought I might have it and I was estatic because patients with it can live 18 to 30 years and there are treatments for it. Don't give up hope yet.
 

joejoe

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Feb 18, 2006
Messages
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Hi Sumar ,I have been seeing Dr Zinman for about a year now and he is very good .
Before him I had 2 other emgs done,but he still wasnt satisfied till he did his own.
Hoping for all the best

Joe
 

ruby ben

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Jan 17, 2006
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Hi Al - could you please explain Multifocal Motor Neuropathy. Thanks..............ruby
 

spud01

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Hi everyone,

I am not sure how to start a new post. I still haven't learned, so I apologize if I am in the wrong spot. Has anyone heard of a guy named, Jonathan Blais. He apparently is a guy with ALS, who is either did or is going to complete the ironman competition. Is this for real or what. It appears he is trying to raise money. It is very inspirational and encouraging if it is true.

I hope everyone is enjoying the holiday weekend. Beautiful weather here in Maryland, USA.

Terri
 

ruby ben

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Hi - I found Multifocal Motor Neuropathy on the web. I gather it just affects the hands...................ruby from vancouver
 

Beebe

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forked river
suemar

Hi there, I read your post and since your symptoms are similar to my son-in-law Jack I thought Id write to you. Jack was diagnosed in April. He already started I think around February, had problems with his fingers couldn't grab a nail or screw and he had twitching, arms and legs. Was in hospital locally miss diagnosed sent home in March said it was arthritis and carpal tunnel. My daughter and I knew but hoped it wasn't ALS when he went to Jefferson hospital in Philadephia, Pa. Weakness in arms and legs started in March. He looks healthy has gained 6 pounds has been eating 3 meals a day all organic, takes mega vitamins. He too gets tired if he walks too far. Some times his balance is off he forgets and tries to do something that was not a thought before. HE WAS A CARPENTER. I have to look up the diagnosed you mentioned there are a few diseases that have similar symptoms . I hope it's not ALS . Keep in touch. My best to you, Beebe
 

Barbie4

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Thinking of you Sue

Hi Sue:

I just got back from being away and read your new post. I SURE HOPE that you do not have ALS and that you have something treatable. I am glad to hear a little ray of hope. I am also very glad to hear that the Neuro from ST Mikes called and apologized. I think he has been in alot of poop lately, because the big wig down there called Gail the other day and said they were changing their whole procedures with regards to ALS Diagnosis and how they deliver the news. She said that it was because of Gail's complaints and that she wasn't just giving Gail lip service, so we will have to see. The same Neuro apologized to Gail too and admitted he didn't deliver the news in the best manner. She also told Gail that Cancer patients leave with an enormous amount of support and info, and that she will make the changes needed for ALS.
I thought that was good news too. I just hope St Mike's follows through with it, so that no one else has to be treated as you two were.

keep us posted Sue, and will I still meet you on Friday?

Barb :)
 

suemar

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Joined
Apr 24, 2006
Messages
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Toronto
Symposium

Hi Barb

I will be there. Looking fwd to mtg u


Sue
 
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